Born to Be Wild and Free

I'm about to navigate a topic of living with a disability that I've experienced first hand but am not the knowledge base expert on. Underrepresentation. I was in my late thirties the first time I read a work of fiction with a prominent character who had Cerebral Palsy. Let that sink in. 

Growing up, if I watched a movie with someone who had a disability, it likely wasn't CP, the character probably had a pity/sympathy arc, I can almost guarantee they were bullied, and they definitely weren't the main character. 

There's an old saying, art imitates life.

As a child, I definitely endured a fair amount of bullying. As a teenager, I felt like I was on the sidelines of the things I wanted to do socially. The only space that I've ever felt close to breaking those stereotypes is professionally because of my accomplishments. 

But, the only times I've ever felt like I was living my own narrative are when I've been on stage with a guitar, writing, or sharing real stories. I've found representation through my own means of storytelling not typically from entertainment media. 

Because of that, I didn't used to think twice about the lack of representation because it's just the way it is. When I read that book, the person who recommended the book to me asked if the portrayal of CP was accurate, it was for me (maybe not for others). 

The character was a defiant, witty, spitfire young woman who fit that description because she had CP and literally had to fight for everything. Her fighting spirit carried the book. I finished the series, but she wasn't in the next two books of the trilogy. 

Those traits resonate for me because I've had to fight for everything too. I've learned that people don't like the defiance much, so I temper it most of the time, and then people are surprised when it comes out. 

When I go to work, I try to show up for what's expected rather than represent how living with CP has shaped my personality. Over the past year I've changed that a lot because I learned by accident that my stories could matter to total strangers. 

I share this because it's a side effect of underrepresentation. It's not considered normal to be different and as a result it can be easy to underrepresent yourself. It's not just about having characters in books and movies. It's about seeing possibilities and saying to yourself, “I can do that.”

I didn't have the benefit of stories that portrayed someone like me being the hero, getting the love interest, achieving success, and so on. I've reached a point where I have more space to properly represent myself, but I'm still cautious about it. 

I'm cautious because sometimes people like to push me around and I like having steady income so I refrain from telling them off out of professionalism rather than a lack of ability to be assertive. I'm arguably more successful than a lot of my professional peers, that's not a flex because I don't feel like it. I still feel like it's their world and I'm just living in it. That's how representation has tangible impact. 

I forget who said, fortune favors the bold (you're on the internet, you can look it up and then borrow the book from your local library). The boldest thing I do is choose when to walk away (I'll let you decide what you read into that). 

I believe in the power of voices that speak to your experience. Maybe someone's story about climbing mountains will encourage you to share your own. Maybe a fictional character who's a defiant badass with CP will make you smile and say, “I am too.” And, that gives you a little more courage to keep going when you're not sure you'll ever “live your best life,” but you live the life you have the best you know how, which is easier said than done without role models. 

The fact is, non-disabled people have been my most vocal supporters and inspirations in sharing my experiences living with Cerebral Palsy. But, I definitely want to connect with the CP community and share my stories there. I'd love to be on the Cerebral Palsy Grows Up podcast because I think it would be a blast. 

In late April, I'm going to be talking about Cerebral Palsy and Intersectionality at a professional conference. That all started because I took a shot in the dark last winter, showed up to a place I'd never been, and did something I'd barely ever done at that point – speak publicly about life with Cerebral Palsy and Intersectionality. 

I started this blog because I really want to get out there and talk about this and maybe if people read my posts it'll lead to speaking opportunities. As I wanted to highlight underrepresentation, I see that once more I've created my own representation. There's some cool new stuff out there within the CP community and maybe one day, I'll be standing side by side with those folks telling stories because one thing I know we agree on is that our stories are important in helping us be seen.